Today I want to share something with you. It’s something I rarely talk about and that very few people know about me. But, since yesterday was my 5 year anniversary, I am overwhelmed with feelings. I can’t believe where I am in my life today and want to share my happiness with you.
As far as I can remember, I have always been in and out of the hospital. When I was 2 years old, I was diagnosed with Sickle Cell anemia. Sickle Cell anemia is an inherited blood disorder that affects hemoglobin. Hemoglobin is the protein found in red blood cells that helps carry oxygen throughout the body. Normal red blood cells have a smooth and round shape and move easily through blood vessels. Sickle blood cells have a sickle or crescent shape and are stiff and sticky. They tend to block blood flow in the blood vessels of the limbs and organs. Blocked blood flow can cause acute and severe pain and organ damage. The disease can cause serious complications such as impaired blood flow to organs, infections, swellings in hands and feet, kidney damage, blood clots, and stroke.
As a child, I remember being in constant, excruciating pain but never knowing what was fully going on. I knew I was sick, but never thought of Sickle Cell anemia. As I grew older, I came to know about the disease and how it was to live with it. I always felt like I was living with a “secret” disease since someone can look at you and never know that you are sick.
But the daily struggle of being in pain and feeling sick inside was a reality. I remember classmates asking why I was always absent from school and it was hard to explain. They could not understand me. I struggled throughout my school years as I spent most of the time at the hospital. The hospital became a place where I became well known.
To be honest, my high school years were a disaster. I was having more severe pain crises and longer hospitalizations. On top of this, I was struggling with depression and feeling very low mentally. I was wishing and thinking of ways I could end this battle. Smiling on the outside, but screaming on the inside, hoping that it would be better. In all these circumstances, I have always kept my faith. People with sickle cell know that the disease makes you fearful. One fear is never knowing what kind of future you will have. What you think about is how long you can hold on. Little did I know all that was about to change.
During High School
During my high school years I was hospitalized a lot, once even for a month due to fevers and crises. One morning as I was lying in bed at the hospital feeling tired, a doctor I had never seen before came to have a talk. I was usually seen by a hematologist that I was familiar with. But, this was someone new. He started examining me, after finishing he sat down and asked how I was feeling. I said, “Well, I’m here so not very good…hello!” Then he continued saying that I must start thinking about what I want to do. At my confusion, he then said something that I had never heard any doctor say to me before. He said there was a way for me never to suffer from sickle cell anemia again! I couldn’t believe what he said because I had always believed there was no cure for this disease. He then mentioned a bone marrow transplant (Allogeneic stem cell transplant) and urged me to consider it. I was lying there all feverish looking like a question mark because I didn’t understand what he meant.
He explained everything to me including what a stem cell treatment is and what it would mean for me to go through.
Allogeneic stem cell transplant is when you use stem cells from another person, called a donor, whose tissue type closely matches the patient’s. This is decided through special blood tests. The best donor is a close family member, parent, sister, brother, or child because they are most likely to be a good match.
Testing my family was the first step. The test determined if they have a genetic tissue type that matches mine. My dad, mom, sister, and brother all got a blood test. It turned out that my sister was a match!
Next, I met with a specialist and asked all the questions I had about the transplant. In my mind, I had no doubt I wanted to do the treatment. I went through a lot of tests and check-ups before the transplant date. I started my treatment on September 7, 2012. As with cancer patients undergoing a transplant, I had to have high doses of chemotherapy. I had chemo to kill the stem cells in my bone marrow that were producing sickle shaped cells.
New Stem Cells
A few days later, I was given the new stem cells from my donor a.k.a. my sister. They inserted the stems cells through a vein like a normal blood transfusion. Over time these cells settled in my bone marrow and began to grow and make healthy blood cells. I was in the hospital for almost a year. Despite having SCD, the treatment was the toughest thing I ever did but it got me to where I am today.
Currently, I don’t have sickle cell anemia any more! Words cannot describe how grateful and thankful I am. I thank God for what He has done in my life. This journey has been a long road that finally ended in happiness! Five years later, I’m living my life without any sickle cells in my body and studying to become a nurse.
For you warriors still struggling from this disease don’t give up! You are strong and truly a fighter!
I know that a lot of times it’s hard to keep your head up and you want to give up but know that you are not alone and that God sees you. Warriors, if you are interested, please talk to your doctors and ask more about getting the transplant. Get them to talk about the treatment and inform you of all your options.
Also, I want to encourage family members out there that have a loved one who suffers from sickle cell to go and test yourself to see if you are a match. It’s a simple blood test. There is still so little awareness about sickle cell and what kind of treatment options are available. That’s why it’s very important to keep on raising awareness for Sickle cell anemia in any way we can. Each of us has to join the fight to increase public awareness about sickle cell. What better way to do it than on National Sickle Cell Awareness Month. I hope you are encouraged by my experience.
Do not give up. Keep on fighting! Stay strong!
Ask Henrietta your questions about her experience below.